So this is something “healthy” people don’t always understand. Being sociable and surrounded by people can be exhausting.
I live on my own with my dog. I spend 75% of my time sleeping and resting. More than handful of people currently tires me out so I’ve had to start saying no to things.
For me it’s not just a matter of being tired but that when I’m tired my ataxia gets a lot worse to the point I can barely walk or talk, eat or drink without choking.
This will resound for many people with rare and chronic illness, generally we are not good with crowds, we get tired easily and cannot be as outgoing as we would like. We are not being antisocial, we would love to join in lots of activities but can’t.
I know each weekend I can only do one thing and if it’s an evening event I need to nap before it to get through it. It sucks but I’ve learnt pushing myself through several things is not worth it.
If several things are happening over several days that I really don’t want to miss I’ll make sure that the following few days are empty so my body can recover as I sleep.
I guess this comes back to the “spoon theory” and not having enough energy for everything. Personally I don’t like the spoon theory as I find it too simplistic as you never know how much energy you are going to have to begin with or how much energy an activity will use up but in getting people to realise that you don’t have limitless energy it’s a good idea.
So if we pass up on a fun day out, or any chance to be social don’t take it personally we’re just saving ourselves.
How Rare? 